Hi, I am a 38 yr old female. I have some questions relating to lab testing for MGUS/Myeloma.
Last year I had a unrine analysis that was screened for Kappa/Lambda and ratio. I had 3 UA's done over a 6 month period. My Kappa level gradually increased as well as the K/L ratio. The last test showed K/L ratio 16.84 ref 2.04-10.37
Kappa 79.00 ref 1.35-24.19 mg/l
(I don't have lambda level written down).
This was on a UA - NOT a 24 hr. test.
FLC testing of my blood was negative several times.
An IFE and SPE were both negative. My bone marrow biopsy was essentially normal with a mild increase of 7% plasma cells. I also had a kidney biopsy which was unremarkable. A bone survery showed no lytic lesions.
I have a history of two pulmonary embolisms and one embolic shower stroke. I have moderately elevated Factor VIII and moderately elevated Von Willebrand Factor/Activity. I am being treated with Lovenox injections 2x daily.
I also had an unexplained left 9th or 10th rib fracture 3 years ago. I have osteonecrosis confirmed by MRI in my left knee, and it was confirmed in both knees by x-ray. I have quite a bit of bone pain in my legs.
My hematologist initially suspected MGUS that transitioned to smoldering, but after all the testing last year, he doesn't believe I have MGUS, but he can not explain the elevated levels of Kappa and the elevation of the K/L ratio.
I was recently referred to KU Med Center to a hematologist there so that my orthopedic doctor has a local consult when I need to have my knee replaced. I have only seen this new hemo once, but after reviewing my lab work, he suspects MGUS. I am scheduled for more lab work and another bone survey next week. I really do not want to undergo another BMB unless it is necessary, but this new hematologist mentioned I may need one.
Since my IFE and SPE were both negative, could it be a form of non-secreting MGUS, or is the presence of the elevated Kappa and ratio the equivalant of an M-spike? Is elevated Kappa in the urine the same thing as Bence Jones? My bone marrow showed polyclonal (which is good) rather than monoclonal cells, so if the elevated Kappa is the same as bence jones, why is there monoclonal cells/light chains showing in my urine. All this is really quite confusing, and I would like some clarification so I can understand all this better so I know what kinds of questions to ask the Dr. when I see him. Thanks so much for your time!
Forums
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: Lab Test Confusion
Dear Kristina,
I agree that the picture is confusing, and is not really fitting into any of the typical categories of plasma cell diseases. My suspicion based on everything you've provided is that you do have a low-level, kappa light chain MGUS, but the plasma cells should really be monoclonal kappa in the marrow, not polyclonal. Having the staining for kappa and lambda repeated on your prior bone marrow (or just getting another bone marrow biopsy) may help clarify this issue. I would also suggest doing a full 24 hour urine for UPEP and urine immunofixation to see if there is really an M-spike in the urine. I have found that the quantitative kappa/lambda light chain test is often unreliable in the urine, especially on just a random (ie non-24 hour) sample. Also, have you ever been tested for an autoimmune disease, like lupus? Monoclonal gammopathies in younger patients can sometimes be a reflection of an autoimmune process, and given your age and history of blood clots, this would be something I would be thinking of. It sounds like you are getting the appropriate testing done, and it may just take some more time to really determine what this is.
Best of luck,
Adam Cohen
I agree that the picture is confusing, and is not really fitting into any of the typical categories of plasma cell diseases. My suspicion based on everything you've provided is that you do have a low-level, kappa light chain MGUS, but the plasma cells should really be monoclonal kappa in the marrow, not polyclonal. Having the staining for kappa and lambda repeated on your prior bone marrow (or just getting another bone marrow biopsy) may help clarify this issue. I would also suggest doing a full 24 hour urine for UPEP and urine immunofixation to see if there is really an M-spike in the urine. I have found that the quantitative kappa/lambda light chain test is often unreliable in the urine, especially on just a random (ie non-24 hour) sample. Also, have you ever been tested for an autoimmune disease, like lupus? Monoclonal gammopathies in younger patients can sometimes be a reflection of an autoimmune process, and given your age and history of blood clots, this would be something I would be thinking of. It sounds like you are getting the appropriate testing done, and it may just take some more time to really determine what this is.
Best of luck,
Adam Cohen
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Dr. Adam Cohen - Name: Adam D. Cohen, M.D.
Beacon Medical Advisor
Re: Lab Test Confusion
Dr. Cohen
Thank-you for taking the time to read my post and respond. I will check with my Dr. to make sure those tests get ordered, and discuss having another BMB. I appreciate the information!
Thank-you for taking the time to read my post and respond. I will check with my Dr. to make sure those tests get ordered, and discuss having another BMB. I appreciate the information!
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
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